The first national dementia plan in Europe

In 2001, France became the first European country to launch a national dementia plan. At the time, there were some 600,000 French people with dementia, of which half were diagnosed and one third were receiving treatment. 75% of people with Alzheimer's disease were living at home and 50% of all nursing home residents lived with some form of dementia. A day's care cost EUR 60 while full-time residency in a nursing home ranged between EUR 3,000-4,600.

The first French Alzheimer Plan ran from 2001-2005 with six objectives:

Identify the early symptoms of dementia and refer people to specialists

Create a network of "memory centres" to enable earlier diagnosis

Produce ethical guidelines for families and care homes

Provide financial support for people with dementia, establish day care centres and create local dementia information centres

Build new residential care homes and improve existing homes

Provide support for research and clinical studies

By 2004 there were nearly 800,000 French people with dementia, including a growing proportion of women and 18% of all people over 75. More than 165,000 new cases of dementia were diagnosed annually, with an associated life expectancy of eight years. Alzheimer's disease was now recognised as a chronic disease by the French social security system and the need for continuing support was clear.

Expanding the objectives: the second Alzheimer plan

The second Alzheimer plan lasted until 2007 and added four objectives to the original set:

- Seek eligibility of dementia for 100% insurance coverage.

- Identify and support the needs of younger people with dementia.

- Provide training and support to professional and volunteer workers.

- Develop emergency housing resources.

Public investment and European involvement: the third plan

The third Alzheimer plan was launched on 1 February 2008 by President Sarkozy, who pledged EUR 1.6 billion to the five-year programme. The original objectives were updated and integrated into four main activity groups:

In February 2011, a three-year review of the plan took place with the President, government ministers and experts taking part. The reviewers agreed that the third plan should be followed by another, which should be just as ambitious, in order to maintain momentum and capitalise on advances made. The third French Alzheimer plan expired at the end of 2012.

During his 2012 presidential campaign, President Hollande stated that he would support the launch of a fourth French Alzheimer Plan.

On 26 June 2013, Marisol Touraine, Health and Social Affairs Minister, Geneviève Fioraso, High Education and Research Minister, and Michèle Delaunay, Minister for Older Persons and Autonomy, received the evaluation report of the third French Alzheimer Plan.

The evaluation was made by Prof Joël Ankri and Prof Christine Van Broeckhoven. It highlights the major achievements of the plan in research, diagnosis, support of people with dementia and support to their families. The report also lists 56 recommendations for future action.

The authors noted the significant progress in patient care pathways. In addition, French research teams are now better recognised at international level. This is due to major achievements in understanding dementia, notably in the field of genetics. Efforts to develop innovative biomarkers must continue, to allow early diagnosis of Alzheimer's disease.

The report also recommends better national integration and collaboration between care structures and service providers, including entry points, adapted care and specialised Alzheimer teams in healthcare centres all over the country. Finally, the report calls for an extension of the Alzheimer Plan, including other neurodegenerative diseases that may involve common resources.

The three Ministers stated their intention to continue supporting people with dementia and their carers. They will work to integrate the recommendations into a new plan, which will be presented on the occasion of World Alzheimer Day on 21 September 2013.

Florence Lustman, Coordinator of the French Alzheimer’s Plan highlights her top priorities for implementation and the need to develop the Plan on a pan-European level (June 2008)

Alzheimer Europe (AE): Ms. Lustman, you have been appointed by President Sarkozy to coordinate the implementation of the ambitious French Alzheimer’s Plan, a plan that covers 44 important recommendations. Can you highlight the three priorities which you would consider to be the most urgent or important?

Florence Lustman (FL): With resources of 1,6 billion euros over 5 years, the Alzheimer’s Plan aims to integrate research, medical care and social care to fulfil the needs of patients and their carers.

The first priority of the plan is to know better Alzheimer’s disease in order to defeat it. A scientific cooperation foundation will be set up with both public and private funding. It will coordinate nationally a stronger “translational” research and international cooperation. The goal has been set by President Sarkozy: “to discover or validate a diagnosis or a treatment within 5 years”.

The second priority is to improve the quality of life for patients and their carers. First, the plan will help patients and their families cope with the shock of discovering the disease by giving them a better access to a coached diagnosis. Secondly, the plan will increase the quality and integration of health and social care ; it will give every patient access to a one stop-shop, the MAIA, where a specifically dedicated case-manager will design an integrated plan of health and social care suitable for the patient. Home-based support will be developed with new respite structures and adaptation of housing to cognitive handicaps. In rest homes, Alzheimer units will be set up. In all cases, health and social staff will be specifically trained in Alzheimer’s and related diseases.

The third priority is ethical : to change the way people look at Alzheimer’s disease and to set up a new status of the patient.

AE: Alzheimer Europe was delighted to see that the French Alzheimer’s Plan also mentions the importance of making Alzheimer’s disease a European priority. Which actions should we expect to be taken under the French Presidency of the European Union in the second half of 2008.

(FL): My mission specifically involves an international perpective : I am developing all useful relations on an international and European basis. The Alzheimer’s plan includes the organization of a pan-European conference on Alzheimer’s disease under the French Presidency of the European Union. This conference will take place in Paris on October 30 and 31st 2008. It should focus on three main topics including an ethical perspective on each one: developing the coordination of the European research, presumably on strategies of prevention of the disease and the subsequent loss of autonomy ; sharing good practices or standards in the management of health of social care on a European level ; identifying common objectives on specific skills and training of medical and social staff related to Alzheimer’s disease. We look forward to cooperating within Europe on all these subjects.

Alzheimer Europe takes a look at the launch of the French Alzheimer Plan (article June 2008)

The French President, Nicolas Sarkozy, announced the far-reaching “French Alzheimer Plan” on 1 February 2008, pledging 1.6 billion euro to the five-year programme. The Plan aims to fight dementia and is concerned with three main areas, firstly, to improve the quality of life for people with dementia and their carers, secondly, to develop our understanding of the disease for future action and, thirdly, to mobilise society for the fight against dementia. In total, the Plan lists 11 objectives and over 40 comprehensive measures to achieve these objectives.

Perhaps the most significant measure is under the ambit of developing our understanding of the disease where one objective is to “produce an unprecedented effort for research”. No less than 13 recommendations are listed under this objective to make France one of the leading countries for dementia research. It is also proposed to establish a new foundation for Alzheimer’s research which should coordinate all efforts of doctors, scientists and researchers in addressing dementia.

The first measure to have been implemented is the “Alzheimer’s disease health and emergency care card” which has been issued to secure better and more appropriate treatment in the case of emergencies for people with dementia. The card opens to display the person’s details, including contact information as well as “golden rules” for handling the disease. This initiative is one of the first direct results of the report by Joel Menard, which made a number of recommendations for better solutions for helping people with dementia and which formed the basis of many of the Plan’s priorities.

The Plan also aims to help families deal with the stress involved with caring for the people with Alzheimer’s and foresees some key initiatives, such as the development of respite care, carer training programmes, domiciliary care services as well as the setting up of a network of nursing homes.

To help meet the 1.6 billion euro cost of this comprehensive plan and, recognising that the cost of caring for people with Alzheimer’s disease in France is around 10 billion euro per year, the President believes that everyone should help fight the disease. President Sarkozy therefore proposed that patients contribute a token amount towards their prescriptions and any paramedical aid or medical transport. He also recognises that “this is a lasting commitment on behalf of the state in the fight against this disease. This is a personal commitment”.

The plans have been well-received by all stakeholders, including the French Alzheimer Association.

Although the President called Alzheimer’s disease a “real national drama”, recognition is given to the scope of the disease with the President planning to use the French Presidency to organise a pan-European conference on Alzheimer’s disease. Summarising the path ahead, President Sarkozy said “To fight this illness is a challenge. It has nothing to do with left or right-wing politics. All governments over the next 30 years will be confronted by it.”

26 June 2013: Evaluation of the French Alzheimer Plan completed

On 26 June, Marisol Touraine, Health and Social Affairs Minister, Geneviève Fioraso, High Education and Research Minister, and Michèle Delaunay, Minister for Older Persons and Autonomy, received the evaluation report of the third French Alzheimer Plan.

The evaluation was made by Prof Joël Ankri and Prof Christine Van Broeckhoven. It highlights the major achievements of the plan in research, diagnosis, support of people with dementia and support to their families. The report also lists 56 recommendations for future action.

The authors noted the significant progress in patient care pathways. In addition, French research teams are now better recognised at international level. This is due to major achievements in understanding dementia, notably in the field of genetics. Efforts to develop innovative biomarkers must continue, to allow early diagnosis of Alzheimer's disease.

The report also recommends better national integration and collaboration between care structures and service providers, including entry points, adapted care and specialised Alzheimer teams in healthcare centres all over the country. Finally, the report calls for an extension of the Alzheimer Plan, including other neurodegenerative diseases that may involve common resources.

The three Ministers stated their intention to continue supporting people with dementia and their carers. They will work to integrate the recommendations into a new plan, which will be presented on the occasion of World Alzheimer Day on 21 September 2013.

The report can be downloaded below.

Marisol Touraine, Minister for Social Affairs, Health and Womens’ Rights, Geneviève Fioraso, State Secretary for Higher Education and Research, and Laurence Rossignol, Secretary of State for Families, Older people and Autonomy, launched the new French neurodegenerative diseases plan for 2014-2019 on 18 November.

Announced by France’s President Hollande, the plan has three main priorities: